Waiting and Seeing

stayingcalm
stayingcalm Member Posts: 650
edited March 2014 in Lung Cancer #1
Well, it seems my lung scan was good, no change in the nodule. The bad news is all in my head, literally - there's a new tumor growing where the old one was. Once again, a targeted drug has failed to protect my brain >:-( (that's an angry face, in case you couldn't tell)
Since my brain has had all the radiation it can take, CyberKnife, Gamma Knife, Stereotactic radiosurgery are all out - seems like my only option is surgical removal, again (rolling eyes). It may have gone well the first time; twice is asking a lot from my lucky stars!
I haven't really sat down and talked to my doctor yet, he's waiting on a call from a neurosurgeon. Possibly I CAN have the really focused radiation, I just remember someone telling me I've had my limit.
Ah, wait and see, wait and see...see what happens when you wait? ;-)
This also brings home the pointlessness of the WBR I had and the fallout from it that will be with me forever...

This isn't very positive is it? Well the reality is that I'm not horribly worried, I think my doc may have a thing or two up his sleeve. I hope!
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Comments

  • lekkerone
    lekkerone Member Posts: 199
    Staying Calm
    We haven't really met but I wish you all the best Deb. You have an amazing attitude.
  • david f
    david f Member Posts: 12
    Hi,
    My wife had a

    Hi,
    My wife had a mastasized brain tumor as will and they operated to remove it. She did have the focused radiation in August and it has not reappeared since ( we got ct results today). Her chemo reduced her lung growth by 50 % and the experimental drug she is on now as a maintenance treatment (imetelstat) reduced it another 50%. I hope this gives you some more hope. I know it has been mindblowing to us that everything seems to working out well
    Dave
  • mrsbotch
    mrsbotch Member Posts: 349
    david f said:

    Hi,
    My wife had a

    Hi,
    My wife had a mastasized brain tumor as will and they operated to remove it. She did have the focused radiation in August and it has not reappeared since ( we got ct results today). Her chemo reduced her lung growth by 50 % and the experimental drug she is on now as a maintenance treatment (imetelstat) reduced it another 50%. I hope this gives you some more hope. I know it has been mindblowing to us that everything seems to working out well
    Dave

    Hi
    You are quite a woman and you will beat this once again. I have a gut feeling about it. You're too good a person for this CRAP to get you


    You go girl and do whatever it takes


    Love

    Barb
  • luz del lago
    luz del lago Member Posts: 449
    I'll be pulling for your lucky sttars!
    Deb,
    You are amazing! Your insight and knowledge was one of the first I noticed when I first came to this site. You are straightforward and honest. I try never to second guess myself or look back and think, was that the right decision? The decision I am speaking about is my love's decision to get PCI. However, it was not mine to make. I think he put all information on a scale, and believed that he should not leave any stone unturned. He also had such a difficult time acknowledging this disease! But I know one thing, when I would share your posts, he really thought about what you had shared! I feel that the PCI and the last chemo really affected him in so many ways. And to think, the Monday he passed, he was to begin Topetican!
    We are so unique, and each one of us can have such unique responses to treatment! I wish sometimes that he had not done the PCI or the carbo/taxel. I feel now that they were instrumental in lowering his quality of life.
    Having said that, I believe that your Doc will have something up his sleeve for you. But the strongest believe I have is that your way of being will be what really makes a difference for you!

    My best wishes for you,
    Lucy
  • 3Mana
    3Mana Member Posts: 811
    This sucks
    Glad your lung scan was good, but sorry to hear about your latest tumor in your brain. Damn, why does this have to happen when you've been through so much? I wish there was something I could do. I guess it's a good thing that you're not really too worried.
    Hey, how is your daughter doing? I just remember that she was having some problems. Hope she's okay cause you sure don't need that to worry about.
    When is your doctor going to let you know what the next step will be?
    Well, try and hang in there. The WBR might have given you a problem, but you sure are still thinking clear girl!!! Keep in touch! "Carole"
  • stayingcalm
    stayingcalm Member Posts: 650
    3Mana said:

    This sucks
    Glad your lung scan was good, but sorry to hear about your latest tumor in your brain. Damn, why does this have to happen when you've been through so much? I wish there was something I could do. I guess it's a good thing that you're not really too worried.
    Hey, how is your daughter doing? I just remember that she was having some problems. Hope she's okay cause you sure don't need that to worry about.
    When is your doctor going to let you know what the next step will be?
    Well, try and hang in there. The WBR might have given you a problem, but you sure are still thinking clear girl!!! Keep in touch! "Carole"

    Hey, thank you all!
    Your support is like a warm blanket, thank you guys!
    3Mana, my daughter is doing great, she came downstate for a visit this last weekend and it was so good to see her! She may come home permanently in March.

    I'm supposed to call my doc tomorrow to find out whats going on and what he and the neurosurgeon think I should do. Hopefully we can all agree on something!

    ♥ Deb
  • Dan620
    Dan620 Member Posts: 220

    Hey, thank you all!
    Your support is like a warm blanket, thank you guys!
    3Mana, my daughter is doing great, she came downstate for a visit this last weekend and it was so good to see her! She may come home permanently in March.

    I'm supposed to call my doc tomorrow to find out whats going on and what he and the neurosurgeon think I should do. Hopefully we can all agree on something!

    ♥ Deb

    Stay strong
    Hi Deb, I am so sorry to hear this news, but you are one amazing woman and you will win this round also. When i first came to this site i was so inspired by you, soccerfreaks and nodawgs storys it made my battle with cancer so much easier to know what you all went through to fight this devil desease. Like i said before you are one amazing lady and you will beat this again and like it are not my prayers are with you. Hugs and best wishes ..... Dan
  • mamacita5
    mamacita5 Member Posts: 254
    Dan620 said:

    Stay strong
    Hi Deb, I am so sorry to hear this news, but you are one amazing woman and you will win this round also. When i first came to this site i was so inspired by you, soccerfreaks and nodawgs storys it made my battle with cancer so much easier to know what you all went through to fight this devil desease. Like i said before you are one amazing lady and you will beat this again and like it are not my prayers are with you. Hugs and best wishes ..... Dan

    We Are Pulling For You Deb
    You were the first to respond to my desperate first post in May 2010 when I wasn't sure "if I could even consider being called a survivor". You assured me that yes, indeed I was a survivor. Your words gave me hope when I was hopeless. You are a fighter, and a WINNER. I know you are not much into the prayer thing...but I'm gonna say one for you anyway!
  • Glenna M
    Glenna M Member Posts: 1,576
    Adding another warm blanket...
    Deb, I just want to add another warm blanket to the many you have received already.

    Hoping for the best outcome possible!!!

    Yeah, doesn't the waiting game suck!!! I had to have another biopsy yesterday and won't get the results until Feb. 1st but somehow I'm not panicking like I usually do. I think I've gotten so used to the possiblity of bad news that I don't let it stress me out anymore.

    Stay well and please let us know what your doctors have planned.

    My best to you always,
    Glenna
  • hope0310
    hope0310 Member Posts: 320
    Glenna M said:

    Adding another warm blanket...
    Deb, I just want to add another warm blanket to the many you have received already.

    Hoping for the best outcome possible!!!

    Yeah, doesn't the waiting game suck!!! I had to have another biopsy yesterday and won't get the results until Feb. 1st but somehow I'm not panicking like I usually do. I think I've gotten so used to the possiblity of bad news that I don't let it stress me out anymore.

    Stay well and please let us know what your doctors have planned.

    My best to you always,
    Glenna

    Don't like this waiting ONE BIT!!!
    Deb -

    WOW, never was I expecting you to post this! That damn WBR sucks!! Once and done, and then what?!! Geez.....you are a survivor, and I know you and your docs are going to pull out a can of whoop a** and knock it for a loop again!!!

    Please keep us posted, you mean alot to so many of us here!!

    Be good to yourself!
    Elysia
  • karenbeth
    karenbeth Member Posts: 194
    best wishes
    I hope what ever treatment you need and decide to have does the trick. Sounds like you have been through the mill. I second the many comments here about you being an inspiration--your strength, knowledge, and no bs attitude.
    I was curious what the targeted drug that was supposed to protect your brain is? My partner had WBR already and they are keeping an eye on some spots and I want to know what all his options are.

    Karen
  • hope99
    hope99 Member Posts: 1
    staying calm
    Hi,
    I don't know you either but just finished reading a book about mindfulness and living with cancer...by staying calm, you are helping your body to heal, and boosting your immune system. You are and even better survivor than you think!!! Amazing attitude.
    Hang in there, and I will pray for you.
  • catcon49
    catcon49 Member Posts: 398
    hope99 said:

    staying calm
    Hi,
    I don't know you either but just finished reading a book about mindfulness and living with cancer...by staying calm, you are helping your body to heal, and boosting your immune system. You are and even better survivor than you think!!! Amazing attitude.
    Hang in there, and I will pray for you.

    Deb
    I don't know how you hold up. I HATE THE WAIT AND SEE GAME. Once they tell me what I have to do, I am much better at dealing with it, but the wait and see is horrid. I hope everything goes well and remember there are new trial drugs everyday. They will find something for you that will work, I just know it.
  • mom_of_2
    mom_of_2 Member Posts: 30
    best wishes
    Sorry to hear the latest news. Best wishes to you, hopefully the wait won't be to long.
  • z
    z Member Posts: 1,411 Member
    Stayingcalm
    Hello, I am glad your lung scan looks stable, thats a relief. I hope your dr will tell you what the next step is soon, as we all know the waiting is probably one of the worst parts of going through tx, waiting for answers and results. I told my oncologist at the last ct I wanted my appointment with him the next day, and thats how we will do it from now on. I wish you only the best, and there must be a solution like you said directed radiation. I had IMRT for anal cancer and is that ever a sensitive spot, so why couldn't they do that with the brain, rather than the wbr. What about nano knife? I really don't know that much about it or if could be used in the brain. Whatever needs to be done to stop it must be done and will be done. I will be sending positive thoughts your way. Lori
  • stayingcalm
    stayingcalm Member Posts: 650
    karenbeth said:

    best wishes
    I hope what ever treatment you need and decide to have does the trick. Sounds like you have been through the mill. I second the many comments here about you being an inspiration--your strength, knowledge, and no bs attitude.
    I was curious what the targeted drug that was supposed to protect your brain is? My partner had WBR already and they are keeping an eye on some spots and I want to know what all his options are.

    Karen

    Karenbeth,
    Thank you, I need all the warm blankets I can get ;-) The drug I was referring to is Tarceva. The prior drug and the reason I went on Tarceva, was a clinical trial drug from Exelixis (XL999) that also let the cancer in. I also had WBR, and it did do some damage to memory & concentration, and, well, obviously didn't keep the dogs out in my case =) My doctor is leaning toward surgery, it seems.

    Deb
  • annie60
    annie60 Member Posts: 56
    keeping you in my heart
    I am so sorry I know the doctor will come up with a great plan. Know that I am praying for just that. You amaze me.
  • medi_2
    medi_2 Member Posts: 505

    Karenbeth,
    Thank you, I need all the warm blankets I can get ;-) The drug I was referring to is Tarceva. The prior drug and the reason I went on Tarceva, was a clinical trial drug from Exelixis (XL999) that also let the cancer in. I also had WBR, and it did do some damage to memory & concentration, and, well, obviously didn't keep the dogs out in my case =) My doctor is leaning toward surgery, it seems.

    Deb

    xoxox
    I'm tossing in a quilt...you'll get through this just fine.
    Medi
  • kelli1843
    kelli1843 Member Posts: 72
    annie60 said:

    keeping you in my heart
    I am so sorry I know the doctor will come up with a great plan. Know that I am praying for just that. You amaze me.

    You are in my thoughts and
    You are in my thoughts and prayers for sure.
  • kelli1843
    kelli1843 Member Posts: 72
    annie60 said:

    keeping you in my heart
    I am so sorry I know the doctor will come up with a great plan. Know that I am praying for just that. You amaze me.

    You are in my thoughts and
    You are in my thoughts and prayers for sure.